I have dealt with hydrocephalus since I was 3 years old (1972) I was 5
before the docs figured out what was wrong. By that time, I could
literally hear the fluid "swishing" in my head when I would turn it.
I had also lost the ability to walk because I was so weak. 3 years
and 3 shunts later, I lost my gall bladder because the docs thought
that it was a good idea to put the end of the shunt into it, "it would
help the body absorb the fluid".

11 years and 4 shunts after that fiasco (1987) I began getting sick
again. This time I am married to a miliary man and I get to endure
the military doctors that think that they know everything because they
"read it in the book". And if your symptoms dont follow what it says
in the book that they should be, then that couldnt possibly be the
problem. This attitude was responsible for them telling me that my
headaches were just migrains, even though my vents were 3 times the
normal size. I tried to tell them over and over that I knew my body
and I KNEW the shunt was not working. It didnt matter, I was put on
pain meds and sent home. For the next two years I got to visit the
emergency room about 4-6 times a month for severe headaches that
required shots of Stadol to get rid of them.

Then the real fun begins. In May 1989 I am sitting in my living room
talking with my husband, and in the blink of an eye, I lost 18 months
of my life. I reverted to a conversation that I was having with him
18 months prior. I didnt recognize my foster daughter that was placed
with me 6 months prior. My German Shephard scared the hell out of me
because the last time I remembered seeing him he was a pup. But now
he was 100lbs and running at me.

My husband took me to the civilian hospital in town and it was
discovered that my shunt had malfunctioned and now my vents were 4 x's
the normal size (what a suprise!!). I was taken into emergency
surgery and a whole new shunt system was placed. This should have
fixed the problem, and it did with the hydrocephalus. But now I learn
that I have a PERMANENT short-term memory issue, and my memory
capacity is that of a 5 year old. Well, I am not one to give up so I
fight the military docs to get me into therapy with someone that can
help me overcome this problem or at least teach me compensatory
strategies so I can have a somewhat normal life.

Fast forward to 1996, and here we go again with the military docs. I
start having problems, they dont believe it, pain gets so severe that
they put me in the hospital on a morophine drip to control it. They
do CAT scans every day and they show nothing. Finally, 5 days later
they see a 1mm difference in the size of my vents and decide to do
surgery. The pressure is so severe that the CSF literally shot across
the O.R. when they placed the new valve. I am told by the docs that
my vents are now "RIGID" because they were stretched so much between
1997-1999 that they lost the elasticity in them. That means that CAT
scans and MRI's will no longer show the problem. Oh, and lets not
forget the fact that my body doesnt like the shunt tubing and it keeps
trying to reject it by calcifying it.....thats why I have had to have
so many replacements.

That brings us to today. I am again having problems. I have spent
the last year trying to find a neurosurgeon to care for me. If I find
one on my insurance, they dont do shunts. If they do shunts, they
dont take my insurance. Finally I find one, but she is 90 miles away.
I go see her, she taps the shunt, she takes the pressure from a 15 to
an 8 and my headache goes away. So she says I need a new shunt. Ok,
I can deal with that, at least she listened to me and didnt brush me
off like the others did. I go back to see her on the 20th.

If it stopped here, if the docs were the only thing I had to deal
with, I could handle it. But now I have a short-term memory issue
that I have to deal with. That affects every aspect of my life. I
forget the kids doctors appointments, things I was supposed to do
during the day, peoples faces and names, etc. I keep notes on
everything and that helps some. But try explaining to a boss that
he/she has to take the extra step of writing you a note about
something rather than just talk to you. The job market is tight
enough, they are not going to hire someone that will cause them more
work. But of course they wont tell you that to your face, that would
open them up to a lawsuit. Then I try to go through the state
rehabilitation agency. They are supposed to help people like me find
work. I get told that I do have a disability and qualify for services
but that there is nothing they can offer me because I am "too high
functioning". See, I graduated with an associates degree in 2000 with
a 3.94 GPA. But that was ONLY accomplished with a ton of support from
my teachers, family and accomodations in the classroom. I get the
same story from SSI. And TEXAS is one of the WORST states in the
nation when it comes to services for the disabled. They have almost
NOTHING to offer.

You know, I have been told several times that God doesnt put more on
your plate than you can handle........I dont believe it anymore.

Im sorry, I did not mean for this to be so long. I was just getting a
few things off my chest in an effort to maybe get some feedback or at
least be able to deal with them better.

Thanks for listening
Kris